Hi everyone, I finally had a Rheumy Appt tday, she was lovely and very thorough. I have to get bloods and X-rays done, plus she has prescribed Plaquinal for me. Just wanting to know if any of you have had bad side effects from Plaq? And has it helped with joint pain?
She also said looks like I have a ver mild case of Raynards( dnt know spelling). Hope you've all had a great day. Take care.🍀😃
Hi Razoo
Plaquinol/plaquinil/hydroxychloroquine is quite an effective drug to battle some of the effects of lupus, including bringing the platelets up if that's one of your issues. It work "ok" on joint pain but don't expect miracles.
There are some side effects to it and your eyes must be checked and monitored every year for anomalies.
Most people on hydroxychloroquine are usually well maintained and don't usually have many "flare ups".
If it's a lot of joint pain you have, there's this particular anti-inflammatory called Devils Claw, you can buy it from Holland and Barret as flexi-herb tablets, works wonders in patients with pain and it's a natural remedy. (Do not take this if you're on warfarin)
Please be aware this is non prescriptive advice. I am a medic and have an interest in lupus (mum suffers with the 2 types), this is only based on my findings and experience.
Hope this helps 
Hi Emt1mb, thank you very much for your reply. The Dr told me I won't see improvement straight away, it could take 6 weeks. She also said that if I get any side effects, the moment I stop it, is when the symptoms will subside. I know about the eye tests, Im really scared to take it EmT1MB.
How old is your mum? I do hope she's ok.
Take care.
Hi Razoo
Mum is now 44, she's a young mum I know
When 'us' doctors prescribe medication, the benefits must always outweigh the risks.
Hydroxychloroquine if taken accordingly with tests and how you feel that prove its benefits, it is as safe as taken any other antibiotic. Hydroxychloroquine is used still in the treatment and prevention of malaria.
Hi Emt1mb
Can you give me some more info re: Devils Claw, I am intrigued. Also can this be taken alongside Thyroxine or maybe a few hours apart?
Would appreciate any info.
Debbie
Hi Hollydebs
Devils claw is a root/plant and can be bought from Holland and Barret as Flexiherb (that's the best make of it they sell).
I recommend 2 in the morning and 2 in the afternoon.
You should always check with your consultant if it could contra indicate however it's only not advisable to take in high doses for patients on warfarin.
Thyroxine is a hormone however, so I would advise as safe to take together. They act in 2 completely different way for 2 completely different purposes.
Let me know how you get on
There is some good, reliable information about Devil's claw on the Arthritis Research UK website - arthritisresearchuk.org/art...
Hi Razoo I have been on plaquinil for 6 months now and it has made a difference. Still get flare ups just not as bad you just feel them in the back ground if you know what I mean. Did not know about Devils Claw so might give that a go 😊
Hope it works for you
I've been on plaquenil 400mg since January. It has really helped me. I initially had stomach upsets but they've settled down now.
Hi. I think Plaquenil is well tolerated by most people. However it doesn't work for everyone - for me it made me wake up feeling extremely anxious/panicky, with a sore stomach, and this stopped as soon as I stopped taking it. So I don't take it at all. I also met someone in my lupus support group who also had exactly the same side effects as me and she can't take it either for this reason. But you might be lucky and find no side effects.
Hi Razoo. I started to take Plaquinal yesterday. I was also told it might take 6 to 8 weeks before I noticed the benefit. What I wasn't told was how difficult it is to get hold of. None of the 6 chemists near where I live had it. I read somewhere on this site that it had stopped being made under the name Plaquinal and is now called Hydroxychloroquine Sulphate (brand ZENTIVA). My prescription said Plaquinal and so they wouldn't give me a generic without a new one.
I'm sure others on this site know much more about this than me, but this was my experience. I eventually found a chemist quite far away who still had some Plaquinal in stock.
Good luck! I can't wait for it to start working.
x
I've been on 400mg plaquenil for about two years now. It really helps with joint pains and I'm more able to tolerate the sun now. Before I would blister from just daylight... Certainly no side effects that I have noticed. Hope this helps? It does take a few months to get the full benefits. X
Hi, I've been on hydroxi since 1999, have had no major side effects, eye sight bit dodgy, but that could be ageing process (I'm 49). Have had lupus for 20yrs was diagnosed when my children were very small (30mths n 12mths). I also have Raynaud's which sometimes causes more problems than the lupus. Hope you get on OK . sending lupie ((hugs)).💜
I've been taking it for 3 years now. It helps with fatigue and reduces the number and severity of flares and also helps reduce the cardiovascular issues that occur with lupus. I used to be on 400mg per day but now I'm on 200mg every other day because it impacts my skin and I don't like it. It causes random brown spots that I don't seem to be able to get rid of and it causes rashes like goosebumps on my body. And a white noise in my left ear. Once I reduced the dose, the rash diminished and the white noise disappeared.
I took Plaquenil, but unfortunately did not get any symptom relief as far as my joint pain. I stopped taking it and am going to talk to my doctor about trying something different.
Plaquinel reduced my joint pain and fatigue a great deal. Do remember to get your eyes checked regularly. I have been taking it for over 15 years and have had no problems though I am very sensitive to medications in general.
Hi razoo. Don't be frightened of taking planeqil ps. Sorry abt spelling. 18 mts ago I was having 15 seizures a day. Couldn't stand up and had terrible pain and slurred speech. Now wit planequil and warfarin I xo not have seizures and can now function. Marvelous drug couldn't manage without it. There is one side effect I have and that is some small brown patches on my skin. Docs said they would stop me taking it but have told them brown patches I can live wjth this drug has given me back a life.
Best of luck diane
Hi Razoo I am glad you have now had your diagnosis from your Rheumatologist. I have used Hydrochloroquine which is the same has Plaquine and it seems to control my SLE Lupus but I am not sure because I have been on this medication since 1998 and your body just gets so used to all these types of medications however I hope that you find the medication that is suitable and helps your illness and I hope things work out for you all the very best take care.
I've been using Plaquenil for a few years now, although I have had to move to the generic drug Hydroxychloroquine now as my GP won't write the Zentiva brand on my prescription. Pity because I've a history of gastric problems and I'm worried the Hydroxy will make it worse. Having said that, my joint pain has been better since I've been taking it. I didn't know the brown skin spots were connected with the medication - I've been putting it down to my age!!!! I can't say I've noticed any improvement in the fatigue - but then again it might be worse if I didn't take the Hydroxy.
Good luck Razoo, I hope it works well for you.
HI, Razzoo,
I have been on Plaquenil and it has made no difference to my joints but i was put on prednisalone and my wrists and ankles are not hurting now just my knees.
good luck with yours.
Mycophenolate update after Rheumy appt
finally saw my rhuemmy!
Nothing gained by rheumy appointment 
my rheumy got excited
